Sex education in HIV- affected families Educação Sexual em famílias afetadas pelo HIV

Original Article Page 99 to 108

Sex

education

in

HIV-

affected

Print families

Educação Sexual em famílias afetadas pelo HIV

Authors: Mylène Fernet1; Karène Proulx-Boucher2; Martin Normand Lapointe5; Johanne Samson6

Blais3; Joanne Otis4;

Abstract: OBJECTIVE: This paper aims to explore: 1) the obstacles to talk about sexuality with adolescent children of mothers living with HIV and, 2) the strategies used by mothers to talk about sex with their adolescent children, both from the perspective of the youth as to their mothers. METHODS: A qualitative method was used. Twenty-two participants (11 mother-child pairs) took part in a semi-structured interview. A thematic content analysis was performed. RESULTS: The main obstacles mentioned by the adolescents to talk about sex in the family context are: lack of interest in sexuality subjects, shame to speak about sex with their mothers, difference between generations - adolescents and their mothers - and fear of being known as sexually active. Despite those barriers, few mothers and young people reported having discussed sexuality generally together; their discussions more often concerned STIs and unwanted pregnancies. Some sex education strategies were identified by mothers and adolescents: Seizing opportunities, playing down the topic of sexuality, and sharing anecdotes. CONCLUSION: The obstacles and strategies raised seem to correspond to a conception of sex education as focused on risk prevention. Yet, adolescents' needs go far beyond risk prevention. The understanding of sex education must be expanded and should consider the psychological, emotional and social issues of sexuality. Resumo: OBJETIVO: Este estudo busca explorar: 1) os obstáculos para falar sobre sexualidade com filhos adolescentes de mães convivendo com HIV e, 2) as estratégias usadas pelas mães para falar sobre sexo com seus filhos adolescentes, tanto do ponto de vista do jovem quanto de suas mães. MÉTODOS: Foi usado um método qualitativo. Vinte e dois participantes (11 duplas de mãe e filho/a) responderam uma entrevista semiestruturada. Foi realizada uma análise temática de conteúdo.RESULTADOS: Os principais obstáculos mencionados pelos jovens para falar sobre sexo no contexto familiar são: falta de interesse em questões de sexualidade, sentem vergonha em falar sobre sexo com suas mães, a diferença entre gerações - adolescentes e suas mães - e o medo de ser visto como sexualmente ativo. Apesar destas barreiras, poucas mães e jovens relataram ter conversado sobre sexualidade em geral; suas conversas foram mais sobre DSTs e gravidez indesejada. Foram identificadas algumas estratégias de educação sexual: aproveitando as oportunidades, subestimar a questão da sexualidade, e o compartilhamento de casos. CONCLUSÃO: Os obstáculos e estratégias abordados parecem corresponder à ideia de educação sexual focalizada na prevenção de risco.

Porém, as necessidades dos adolescentes vão muito além da prevenção de risco. O entendimento da educação sexual precisa ser ampliado e deve considerar também as questões psicológicas, emocionais e sociais da sexualidade.

INTRODUCTION Mothers living with HIV face challenges when talking to their adolescent and young adult offspring about sex, including discomfort and a lack of information. Few studies have analyzed the views of young people about sex education at home, especially within the context of families affected by HIV. Positive sexual and romantic development during adolescence is an extremely important component of health and well-being in general. Adolescence is characterized by the appearance of sexual relationships, in parallel to taking decisions and related risks. Families play a very important role in the sex education and socialization of children and adolescents, influencing their values and beliefs about sexuality. In fact, many parents admit that they have a role to play in educating their children towards sexual health, avoiding negative outcomes in the sexual health field. Sex education consists of ongoing, interactive discussions between parents and children on a variety of topics related to sex and social relationships. Communication between parents and their offspring fosters the adoption of safer behaviors, helping the adolescent discuss their sexuality with romantic partners 6 and buttressing self-efficiency in negotiating condom use (condom)7. Communication

on

sexuality

in

families

affected

by

HIV

In Canada, since the start of the AIDS epidemic, some 3,000 children have been born to HIV-positive mothers. Sex education in families affected by HIV has not been widely documented, although some studies indicate that adolescents in these families become sexually active at very young ages, and are more likely to pursue highrisk sexual behavior than youngsters in the population in general. Qualitative studies were conducted with HIV-positive Canadian youngsters infected through vertical transmission (PaHIV)2.10.11 and also with parents and physicians caring for these adolescents. These studies show that sexuality is rarely discussed, and at times concealed in the family, with parents often mentioning only condom use (condom)2.11. Some HIV-positive adolescents infected through vertical transmission also say that their parents ask them to refrain from intercourse in order to avoid further HIV infections. Youngsters from HIV affected families say that they are too embarrassed to talk about sex with their parents. Fielderet al.also report that the parents of children with PaHIV fear the arrival of puberty, which is viewed as a launch-pad to an active sex life. They are concerned about the possibility of having to discuss sexuality with their offspring, stating that they feel unable to do so, as they do not know how to address this matter with them. However, this study does not specify which sexuality-related topics parents would like to discuss with their children. These studies highlight the specific characteristics of HIV affected families in a context where HIV still retains the stigma of a sexually infected disease, where the HIV-positive status of mothers and (if applicable) children is still concealed11, which could well influence sex education activities taking place in these families. Consequently, this study strives to analyze: 1) the barriers faced by youngsters from HIV affected families when attempting to discuss sexuality with their mothers; 2) the sex education strategies used by the mothers, from the parental standpoint, as well as that of their offspring. METHODS Study Design. This paper addresses data drawn from the qualitative phase of a broader-ranging study using mixed methods, exploring Family Quality of Life (FQoL). The main objectives of this study are: 1) to describe different FQoL standards in Québec families with HIV-positive mothers; 2) identify the characteristics of these families that constitute resilience and vulnerability factors for FQoL; and 3) document and contrast statements on FQoL from the standpoints of different family members. Sample and procedures. The core targets of the study are mothers living with HIV (FLWH) and their HIVpositive and negative offspring. The recruitment of FLWH and their children took place in hospitals (n = 64) and communities (n = 36). In order to qualify, the women had to be HIV-positive living in the Province of Québec

(Canada), speaking French or English fluently and with dependent children at least five years old living at home. For ethical and metrical reasons, only children aged 12 years old or more were invited to participate in the study. In order to participate in the qualitative phase presented by this paper, the mothers had to authorize subsequent contact and also have a child aged 12 years old or more. The children had to know that they themselves and their mothers were HIV-positive. Knowledge of their status was essential for this stage of the study, as it specifically addresses the issue of HIV infection and the education that they received on this matter. The study was approved by the Ethics Committee at the Université du Québec à Montréal and by the recruitment clinics. After reading the Deed of Informed Consent, mothers and children discussed, signed and handed in these documents with their consent. The adolescents were free to refuse to participate, even if their mothers had consented, and could leave the study at any time with no problems. A list of resources and costs allowance (CA$ 20) was given to each participant. Data Collection. The mother-child pairs attended individual semi-structured interviews lasting around an hour and a half. The mothers and their children met separately with two different teams of interviewers at the times and places that they preferred. In order to remain anonymous, the respondents selected pseudonyms. A variety of topics related to sexual education in the family were addressed: skills, comfort, challenges and strategies for talking about sexual education at home. Data Analysis. The interviews were recorded digitally and transcribed word-for-word, followed by a thematic content analysis13. This type of analysis involved three stages: 1) coding, which consists of dividing up a material using a code table based on the dimensions obtained from the scientific literature, the theoretical structure and the empirical materials; 2) categorization, when all the coded texts are summarized and topics are assigned in order to make sense of the statements, subsequently establishing the conceptual categories and 3) the connections, based on identification of links among the conceptual categories. This schematization process allows analysis to move from description to explanation of the phenomena under study. The Atlas.ti 5.0 software was used for these operations. RESULTS Social

and

demographic

characteristics

of

the

participants

The social and demographic characteristics of the participants are presented in Table 1, with twenty two respondents (11 mother/child pairs) taking part in the qualitative phase of the study.

Barriers

preventing

youngsters

from

talking

about

sex

with

their

mothers

The adolescents said that they do not discuss the issue of sexuality with their mothers. Four barriers were identified (Table 2): a) Lack of interest in sexuality. Some adolescents said that they are not concerned about a sexuality and have no interest in talking about it with their mothers. Others stated that they are still very young and are not curious about this; b)embarrassed to talk about sex with their mothers - this curtailed the eagerness of several respondents to talk to their mothers when seeking information about sexuality. For

example, a girl could talk about more neutral topics such contraception, but felt very uncomfortable talking to her mother about her desires, as she felt that they were very personal matters; c) Differences between generations. Some respondents felt that the age gap between them and their mothers was very wide, meaning that their experiences with sexuality were quite different and they would not be able to understand each other; and d) fear of being seen as sexually active. Some respondents said that their mothers might believe that they are sexually active if they asked about sexuality. Consequently, they prefer not to mention it, in order to avoid raising suspicions.

Strategies

used

by

mothers

to

provide

sex

education

at

home.

Despite the barriers mentioned by the adolescents, few mothers and their offspring mentioned that they talked about sexuality in general; their conversations focused more on STDs and unwanted pregnancies. An analysis of their statements identified six strategies used by mothers to address the issue of sexuality with their adolescent and young adult offspring. These strategies will be presented as mentioned by the FLWH and their adolescent offspring (table 3), only by mothers (table 4) or only by adolescents (Table 5).

1.

Sex

education

strategies

mentioned

by

FLWM

and

their

adolescent

offspring

Initially, some mothers try to make good use of opportunities to start conversations with their children about sexuality (such as books, television, etc.). This allows them to approach the topic indirectly, thus minimizing the discomfort felt during these face-to-face discussions. Other mothers prefer to wait for their children to ask questions in order to avoid making their children uncomfortable, as they tend to avoid talking about sexuality, and the mothers wish to respect this. The adolescents confirmed that they can ask their mothers questions, and were confident about their ability to reply, depending on their knowledge, or to reach out for help or information, such as making an appointment with a physician, for example. However, some of these adolescents did not specify whether they had ever asked their mothers questions or whether they had discussed sexuality with them. Finally, other mothers explained that they tried to downplay the issue of sexuality, using humor or moving on to an innocent topic, for the issue of sexuality. 2.

Sex

education

strategies

mentioned

only

by

FLWH

Mothers also reported that they often plan interventions tailored to the child's development. Puberty is rated as the best time to begin discussing sexuality with youngsters, as physical changes announce that they are leaving childhood behind. Some mothers see this as an opportunity to share information that they believe is important, while others describe their own experiences and share incidents in order to talk about sexuality with their

children, or they may mention their concerns about youngsters or want their children to learn from their past experiences. This strategy allows them to discuss things that they know, feeling more comfortable and emotionally closer to their children. 3.

Sex

education

strategies

mentioned

only

by

adolescents

Some adolescents reported that their mothers ask questions about what they are learning at school on sexuality or sexual relationships and behaviors. Some adolescents see this as a way for mothers to be aware that their children are learning, and also as an attempt to open up dialogue on this topic. For others, these questions reflect concern on the part of their mothers, but do not pave the way for conversation. DISCUSSION This study differs from other studies of sex education in HIV affected families, as it addresses the views of the mothers and their offspring. The barriers found in this study are similar in many aspects to those identified in studies of adolescents and parents in the population in general. On the one hand, adolescents mention their discomfort and embarrassment when talking about sex-related topics with their mothers. Among other factors, they are afraid that their mothers will believe they are sexually active, and they will have to talk about their private lives. On the other hand, mothers may feel uncomfortable when knowing that their child is now sexually active and may be an object of desire and attraction for someone 14. It is important to note that some of the respondent families were born outside Canada, and this discomfort may be even more intense if the issue of sexuality is taboo in their culture of origin, with some cultural taboos affecting communication on sexuality between parents and offspring15. Bearing in mind that these families must live with HIV - an infection that is sexually transmitted again socially stigmatized - and many women living with HIV voluntarily avoid sexual activities16, it is possible that discussions of sexuality may rekindle the sometimes ambivalent relationship between women infected with HIV and their own sexuality. Some adolescents mentioned that the generation gap between them and their parents is a stumbling-point in their communications. One hypothesis is that the perceived distance between generations may reflect the quality of the relationships between these youngsters and their parents. The children perceive the distances between them and their mothers, blaming these gaps on age. In fact, adolescents with strong family links who are satisfied with the relationships they have with their parents would probably not avoid discussing topics related to sex so eagerly, provided that their parents address the issue first 17. Despite these barriers, mothers report the development of strategies for discussing sexuality with their children. Some of them seem to be more pro-active, launching discussions and making good use of opportunities as they arise, including those offered by the media. This strategy allows them to ease their discomfort or embarrassment when talking about sexuality. On the other hand, others prefer to wait until their adolescents ask questions, assigning them the responsibility of mentioning their concerns. In the literature, we also found that 24% and 46% of parents in the general population had never raised the issue of sexuality with their offspring18, rarely did so4.15. Among the sex education strategies mentioned, only one involved the mother's experience, which consisted of sharing personal incidents. However, with their experiences of living with HIV, these mothers have acquired ample amounts of information that turn them into well-informed sex education agents, fully aware of transmission, prevention and protection factors, as well as risks and treatments for HIV. Moreover, they must handle the issue of disclosure every day, as well as the risk of criminal charges should they not disclose their status to their sex partners. Finally, we note that most of the topics discussed by adolescents and their mothers addressed issues related to prophylaxis and contraception. This finding replicates the project addressing HIV affected families with adolescents who are also HIV-positive, where conversations between parents and offspring on this topic are generally limited to recommendations on condom use, thus avoiding the emotional dimension of sexuality 2. 11. Studies of the general population have also lead to similar conclusions, with parental comfort levels varying by the topics discussed19. For example, Ogle et al.19 noted that parents feel more at ease discussing romantic relationships and sexually transmitted infections (STIs) than sex. Constraints The data in this paper come from a mixed method study using and exploratory, qualitative data collection method, with some constraints, including small sample size. It is possible that a larger sample could document more accurately the links between the HIV-positive status of mothers and barriers encountered when talking

about sex, or further details of the specific sex education strategies used in HIV affected families. Due to the place of recruitment, this sample consisted mainly of FLFHIV living in urban areas. Finally, the replies of the respondents on sex education at home may have been influenced by social convenience, due to the nature of face-to-face interviews. Implications

for

practices

Bearing in mind the specific needs of these families in terms of sex education, it is vital to support actions that: 1. Consider sexuality as a whole, instead of highlighting the dangers faced by youngsters. Instead of focusing discussions on the negative consequences of sexuality, sex education should explore what adolescents need to know, in order to obtain a better understanding of their own psycho-social development (meaning puberty, romantic relationships, needs and values)20. 2. Encourage dialogue and stimulate trust and openness towards changes during puberty, as well as emotional and sexual awakening and sexual-activities (concern, anticipation and knowledge)20. To do so, HIV affected families would benefit from support for establishing contexts where these exchanges could take place with their adolescents. Feelings of closeness and satisfaction in their relationships with their parents would buttress discussions of sexuality, while also enhancing the perceptions of these adolescents during communication with their parents17. 3. Educate parents about the importance of starting to talk about sexuality at young ages, even before puberty. Adolescence is a turbulent period when youngsters feel the need to move away from their parents. This underscores the importance of entering into dialogues on sexuality at young ages, while interactions with parents are easier and closer20. 4. Develop parental skills as sexual educators by helping them clarify their own attitudes, perceptions and opinions about sexuality and its role, when exploring the different sex education situations that might occur with their adolescent offspring (answering questions, correcting distorted information, enhancing awareness, changing attitudes, setting boundaries and offering hints on romantic and sexual relationships) 20.

CONCLUSION The findings of this study show that adolescents in HIV affected families face barriers when discussing sexuality with their mothers and, despite these barriers, some mothers implemented strategies in order to provide their children with sex education. They also show that sex education in HIV affected families focuses more on STDs and avoiding unwanted pregnancies. However, adolescent needs extend well beyond risk prevention. The understanding of sex education must be expanded, necessarily taking the psychological, emotional and social dimensions sexuality into consideration. NOTE This study received financial support from the Canadian Institutes of Research Health (CIHR) through Grant Nº 209155. Awarded to Mylene Fernet. The authors offer their thanks to the families that generously shared their experiences, as well as the community organizations and clinics that participated in this study. REFERENCES 1. Boislard Pépin MA, Zimmer-Gembeck. Adolescent sexual behavior: Current knowledge, challenges and implications for research and practice. In: Peterson NE, Campbell W. editors. Sexuality: perspectives, role and issues and role in society. New York, NY: NOVA Publishers. 2012. p. 1-16. 2. Fernet M, Proulx-Boucher K, Richard ME, LévyJJ, Otis J, Samson J, et al. Issues of sexuality and prevention among adolescents living with HIV/AIDS since birth. Can J Hum Sex. 2007 [cited 2014 Jan 10];16(3/4):101-11. Available from:http://www.creces.uqam.ca/Page/Document/Issues_of_sexuality_and_prevention_among_adolsecents_liv ing_with_HIV.pdf.

3. Dittus PJ, Jaccard J. Adolescents' perception of maternal disapproval of sex: relationship to sexual outcomes. J Adolesc Health. 1999;26:268-78. 4. Byers SE. Beyond the birds and the bees and was it good for you?: Thirty years of research on sexual communication. Can Psychol. 2011;52(10):20-28. 5. Hadley W, Brown LK, Lescano CM, Kell H, Spalding K, DiClemente R, et al. Parent-adolescent sexual communication: associations of condom use with condom discussions. AIDS Behavior. 2009;13(5):997-1004. 6. Aronowitz T, Rennells RE, Todd E. Hetero social behaviors in early adolescent African American girls: the role of mother-daughter relationships. J Fam Nurs. 2005;11(2):122-39. 7. Ancheta R, Hynes C, Shrier LA. Reproductive health education and sexual risk among high-risk female adolescents and young adults. J Ped Adolesc Gynecol. 2005;18(2):105-11. 8. Public Health Agency of Canada (PHAC). HIV/AIDS EpiUpdates, July 2010. Ottawa: Surveillance and Risk Assessment Division, Centre for Communicable Diseases and Infection Control; 2010 [cited 2014 Feb 15]. Available from:http://www.phac-aspc.gc.ca/aids-sida/publication/epi/2010/pdf/EN_Intro_Web.pdf 9. May S, Lester P, Ilardi M, Rotheram-Borus MJ. Child bearing among daughters of parents with HIV. Ame J Health Behav. 2006;30:72-84. 10. Fernet M, Wong K, Richard ME, Otis J, LévyJJ, Lapointe N, et al. Romantic relationships and sexual activities of the first generation of youth living with HIV since birth. AIDS Care. 2011;23(4):393-400. 11. Proulx-Boucher K, Blais M, Fernet M, Richard ME, Otis J, Lévy JJ, et al. Silence et divulgation dans des familles d'adolescents vivant avecle VIH depuislanaissance: une exploration qualitative. Pediatr Child Health [Internet]. 2011 [cited 2014 Apr 20];16(7):404-8. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200386/. 12. Fielden SJ, Sheckter L, Chapman GE, Alimenti A, Forbes LE, Sheps S, et al. Growing Up: perspectives of children, families, and service providers. Regarding the needs of older children with perinatally-acquired HIV. Aids Care. 2006;18(8):1050-3. 13. Sabourin P. L'analyse de contenu. In: Recherche sociale. De la problématique à lacollecte de données. Québec: Presses de l'Universitédu; 2008. p. 415-444. 14. Elliott S. Parent's constructions of teen sexuality: sex panicsmcontradictory discourses, and social inequalities. Symbolic Interaction. 2010;33(2):191-212. 15. Jerman P, Constantine NA. Demographic and psychological predictors of parent-adolescent communication about sex: a representative statewide analysis. J Youth Adolesc. 2010;39(10):1164-74. 16. Bogart LM, Collins RL, Kanouse DE, Cunningham W, Beckman R, Golinelli D, et al. Patterns and correlates of deliberate abstinence among men and women with HIV/AIDS. Am J Public Health. 2006;96(6):1078-84. 17. Afifi DT, Joseph A, Aldeis A. Why can't we just talk about it? An observational study of parents' and adolescents' conversation about sex. J Adolesc Res. 2008;23(6):689-721. 18. Epstein M, Ward ML. "Always Use Protection": Communication boys receive about sex from parents, peers, and the media. J Youth Adolesc. 2008;37(2):113-26. 19. Ogle S, Glasier A, Riley AC. Communication between parents and their children about sexual health. Contraception. 2008;77(4):283-8. 20. Ministère de La Santé et des Services Sociaux. Entre lês transformations, les frissons, lês passions... et toutesles questions. Petit guide à l'usagedes parents pour discuter de sexualité avecleur adolescente [Internet]. Gouvernementdu Québec. 2014 [cited 2014 Feb 20]. Available from: www.msss.gouv.qc.ca/itss.

© Copyright 2015